Learning from and about cancer (chronic lymphocytic leukemia or CLL) by Dr. Brian Koffman

What started as a personal journey of a doctor turned patient morphed into a way to share what’s universal in dealing with cancer, in my case a nasty leukemia (CLL), a failed transplant and a successful clinical trial. The telling of my journey has become a journey to teach about CLL, related blood issues and all cancers. Please visit our new website http://cllsociety.org for the latest news and information. Smart patients get smart care™. If you want to reach me, email bkoffmanMD@gmail.com

Monday, May 30, 2011

My nodes are bigger

I had almost noticed a mildly irritating fullness in my armpits, and now I know the reason why.

My axillary lymph nodes have grown.

I don't need no stinkin' MRI to make that diagnosis.

I can tell when I shower. It is isn't subtle. With the body soaped up, the skin disappears to the palpating fingers and the nodes pop out large and unwelcome.

The MR can't come soon enough, because it is all that is holding me back from the rituximab which now seems more like the critical piece of a remitting therapy than a gentle and unproven maintenance therapy.

Let me explain.

My CLL has always acted more as a lymphoma than a leukemia, always been most troublesome in my nodes, the true proliferative centers in CLL: the last place for my cancer cells to die, and the first home to be reborn. The nodes are where the action is, where the battles are won or lost.

Fortunately the neck nodes, while also bigger and more numerous, are still pretty tiny, and my lab remains good. And I feel well. The MR will tell us so much more, but not until mid June.

It is clearly no longer possible to argue that the purpose of the Rituxan is to maintain the quietude of my cancer, to keep it sleeping. It has awoken first in my nodes, again. Just like it did post transplant.

But it is more true that the cancer hardly demands treatment now. Not even close. If fact, none of the consensus reasons for treatment are anywhere to be seen. My red cells and platelets are holding up, my lymphs are going anywhere, let alone not doubling, and I have no B symptoms, my fatigue not withstanding. And my bone marrow biopsy report revealed a very low tumor burden just a few months ago.

The "plan" discussed in the last post now seems more of a hammering back of the CLL, like bashing down those pesky gophers at the arcade, only to have another pop up somewhere else.

I am anticipating another 6 month run with this bashing of pesky node before I need to get out the monoclonal antibody hammer again.

On a much more important note, I am back from a wonderful visit to my daughter who looks so radiant and full of joy and life with her third trimester belly.

My wife and I and our eldest son and a few of our dearest friends drove up to Emeryville to join her bay area friends for a wonderful baby shower.

Tuesday, May 24, 2011

THE PLAN: More of the same

This is mostly a medical post, so those who aren't CLL or transplant aficionados might want to skim it quickly or skip to the last few paragraphs.

As you know from my spotty posting, my status has been delightfully boring with little new to report.

To understand what I am planning to do, it is important to see it for what it is: more of the same.

Let's go back to last spring when I started down this very smooth path.

Allow me to briefly summarize my journey over the last 12 months.

Almost two years post transplant, my platelets had fallen again, this time over four weeks from 242,000 to 32,000 in May 2010 despite low dose IVIG infusions (30 grams) twice a month.

With the platelet crash I was re-staged to be sure it was ITP.

It was.

My CT scan showed the largest cluster of nodes was way too big: 6.4 x 3.4 cm. on the right side of my mesentery. The flow cytometry showed CLL was back in my peripheral blood again. My ALC was normal but my atypical lymph count had reached 12%. Red cells were fine and I could feel some small palpable nodes in my neck, but nothing worrisome.

So besides the ITP, it was all too clear that the CLL was stealthily but forcefully on the move again.

Yucch.

That's when it was decided to go back to what had worked so well before my transplant, the unusual but magic mix of ciclosporin (CSP) 150 mg twice a day and some heavy cycles of rituximab (R) at 500/M2 weekly x 6. And continue the IVIG unchanged.

It worked quickly. My platelets jumped up immediately and were soon a non-issue again.

As of now, my ITP as measured by my platelet count seems to be stable or even trending upward with numbers often well above the amazing level of 400,000, and never below 270,000 for almost a year now. The therapy is working great for ITP!

After the first cycle of rituximab, my follow up CT scan in September 2010 showed my largest node was 3.8 x 1.7 cm, still much too big, but also much better. My ALC was low to low-normal ranging from 0.52 to 0.79, likely from the R wiping out all my B cells. My bone marrow showed about 5-10% CLL on the biopsy and 3% by flow cytometry.

Not just my ITP, but my CLL was responding to this non-chemo therapy as it had done before.

So I did a second round of 6 weekly doses of rituximab starting in October and finishing late in November. During this time, I also had to reduce the CSP because of its well known nasty side effects when my uric acid jumped to 9.4 (really should be less than 6 but we can accept as high as 8) and when my blood pressure shot up. Thankfully renal function (creatinine and eGFR) stayed in the normal range this time, unlike my last CSP scare.

I eventually readjusted my BP meds and halved the CSP to 75 mg twice a day, which is my present dose. Uric acid is fine again, creatinine has climbed a touch but is still normal, and my BP is great to high normal. It depends on who is checking it. It is always great at my office and alway borderline at the cancer center.

Not a perfect portrait, but not bad. I can't imagine what these renal parameters would be if I wasn't vegan. I do believe my anti-inflammatory diet moderates some of the toxicity of my disease and its treatments.

My ALC is now up to normal ranging from 0.7 to 1.2.

My Hgb has dipped as low as 12.7 but last week was a robust 15. It fluctuates between a bit low and low normal. My red cells are always slightly too big or macrocytic, but it is not progressive.

The few tiny nodes that never went away in my neck after the first round of R therapy didn't change much with the second hit of monoclonal antibody, but they were tiny.

The bone marrow biopsy on March 30 showed 3% CLL on flow, and < 5% on the biopsy. Even better than 6 months earlier. It also showed some mild hypocellularity (30%), which means it may have been beaten up more than I realize with the transplant. FISH studies for the usual suspects for MDS and CLL were negative. All in all a very good result.

The next important piece of the puzzle is the imaging.

Here there is a new wrinkle in the strategy. I am switching to MR. My hospital has just installed a new more powerful machine, and although the details won't be as precise as on a CT, it will be good enough for a new baseline. Truth is that I don't need to know if my nodes are 1.9 or 2.2 cm but I do need to know if they are 2 or 4 cm. All future imaging will be on this same machine, and hopefully this will eliminate the Morton's fork of too much radiation or not enough information. The scan will be in mid June.

What I do know is that my palpable nodes are definitely growing very slowly. Kipps agrees. Is it because of the reduction of the CSP as the nodes seemed to enlarge after the last drop in dosage, or is that the R finally wearing off (it has been 6 months since the last infusion), or is it just what it is.

Unless the MR finds the bad or good extreme of either massive nodes or no nodes, I will be doing 6 weeks of R again in late June through early August. 6-12 weeks later I will repeat the MR.

During this time I will continue on the same dose of CSP and then try to stretch out the IVIG to three weeks between treatments which will also spare my veins, which are getting a little inflamed from years of abuse by the IV nurses.

I hope to make only one change at a time so I can monitor the effect.

After that, I will try to reduce the CSP to 50 mg twice a day, but I am nervous about going lower than that. Rai is not keen on my stopping the ciclosporin, ever.

After that more R again in 6 months and another BMB and MR scan somewhere in there, depending on how things go this summer.

If this is smelling a lot like rituximab maintenance with the every six month dosing, it might be.

But I believe it is more than that because clearly the CSP has anti-leukemic properties proven in the test tube and a few published cases and at least twice in this little body of mine. It is a novel low toxicity combination therapy that probably should be better studied.

I believe this approach is using CSP and R to treat to goal, to shrink those mesenteric nodes.

Maybe I will need to add something like AMD3100 or CAL 101 to get the B cells out of the nodes, but I will cross that bridge if and when I need to.

Imagine no chemotherapy and getting a complete remission!

The plan:

More R, slowly reduce the CSP, and stretch out the IVIG, but don't totally stop either, and watch the nodes in the gut with a MR instead of a CT.

So I can avoid more chemo.

So I can feel well longer without damaging my marrow or likely making my cancer more aggressive or resistant and only mildly mangling my immunity.

So I can stay out of the 5th floor of City of Hope for a second transplant a little longer .

So I can wait out a possible cure without burning too many bridges.

So I can hug and hold my first grandchild, a girl due in July without dreading every cough or drool.

About Me

BkoffmanMD@gmail.com
A family doc and husband of 1 and father of 4 and grandfather of 3 who loves his family and his work. I live with no TV and no microwave, but wouldn't last a minute without friends, art, music, books and the beach. Hockey, good jokes and exotic travel are pretty important too. Writing, Talmud and Zen give meaning to my life. My diet is organic vegan, often raw. I hope the blog makes the load lighter and the path both safer and more fun for those who read it or are going to similar places. I want to help. I crave your comments. If you are new to the blog, check out the portrait my son Will painted (it is the first post), and my very first text post.